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Forgotten in a crisis: Addressing dementia in humanitarian response

GLOBAL ALZHEIMER'S & DEMENTIA ACTION ALLIANCE
ALZHEIMER'S DISEASE INTERNATIONAL
ALZHEIMER'S PAKISTAN
May 2019

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Every 3 seconds someone develops dementia and it’s one of the leading causes of death worldwide. Despite being some of the most at-risk in times of natural disaster, conflict and forced migration, there is a lack of awareness that dementia is a medical condition, meaning people with dementia are being neglected when they’re most in need of support.

This report investigates ways humanitarian emergency responses can protect and support people living with dementia. It draws on the experiences of people affected by dementia, Alzheimer’s specialists in affected countries, humanitarian organisations and inter-governmental organisations including the World Health Organisation and UNHCR.

Our findings reflect a wider issue of a lack of support for older people and those with disabilities in humanitarian response. We have found that people with dementia are systemically overlooked, due to a lack of global awareness of the condition and associated stigma.

The report is a collaboration between the Global Alzheimer’s & Dementia Action Alliance, Alzheimer’s Disease International and Alzheimer’s Pakistan.

Rapid needs assessment of older people Cyclone Idai, Malawi

HELPAGE INTERNATIONAL
MALAWI NETWORK OF OLDER PEOPLES ORGANISATIONS (MANEPO)
March 2019

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In early March 2019, heavy rains and floods affected the majority of the districts in southern Malawi. At least 115,000 were affected, with scores of fatalities, injured and missing persons. The situation intensified when Cyclone Idai reached Malawi, increasing the devastation caused by heavy rain weeks earlier. When Cyclone Idai caused the Shire river to reach capacity and flood, the districts of Chikwawa and Nsanje were among the worst affected. The aim of this rapid needs assessment was to inform the design of  HelpAge International’s own humanitarian response to the devastating impact of Cyclone Idai on older people in Malawi. The Malawi Network of Older Persons’ Organisations (MANEPO) and HelpAge International jointly conducted the assessment in Chikwawa and Nsanje districts in March 2019. The report also aims to support organisations operating in the affected areas to develop inclusive programmes and support advocacy for the rights of older people to be upheld in the response. The report contains key findings of the assessment, together with observations and analysis. 

Disability, CBR & Inclusive Development, Volume 29, No.2, 2018 (Summer 2018)

July 2018

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Research articles are:

  • Lived Experience of Psychosocial Disability and Social Inclusion: A Participatory Photovoice Study in Rural India and Nepal
  • Barriers and Facilitators for Wheelchair Users in Bangladesh: A Participatory Action Research Project
  • A Cross-sectional Survey of Rehabilitation Service Provision for Children with Brain Injury in Selangor, Malaysia
  • Effect of Abacus Training on Numerical Ability of Students with Hearing Loss
  • Cross-Cultural Adaptation and Evaluation of Psychometric Properties of Persian Version of Supports Intensity Scale among Adults with Intellectual and Developmental Disabilities

Review:

  • Developmental Social Work for Promoting the Socioeconomic Participation of Persons with Disabilities: An Application of the Capability Approach
     

Brief reports:

  • Zero Rejection Policy in Admission of Children with Special Needs - Myth or Reality
  • Ujamaa and Universal Design: Developing Sustainable Tactile Curricular Materials in Rural Tanzania

Psychosocial disability in the Middle East

BOLTON. Laura
May 2018

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A K4 helpdesk report, commissioned by DFID (UK), provides a rapid review of literature to provide best estimates of psychosocial disability in specific countries in the Middle East.

Topics discussed include:

Prevalence and different forms of mental health conditions and psychosocial disability

Factors influencing prevalence

Differences across demographics

Provision for those with psychosocial disabilities

Disability data in humanitarian action - Factsheets

HUMANITY & INCLUSION (HI)
2018

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Four factsheets concerned with Washington Group Questions (WGQ) produced in conjunction with the Disability Data in Humanitarian Action programme.

 

Aspects addressed are: collecting data at the household level; collecting data on persons with mental health difficulties and understanding temperality and causality when using the WGQs.

 

UN CRPD: What is Art. 27 and the right to work?

MENTAL HEALTH EUROPE
2017

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This short animated video seeks to explain what Art 27 and the right to work and employment means for all people with disabilities, including people with psychosocial disabilities and focuses on the right to reasonable accommodation

Mental health and psychosocial support for South Sudanese refugees in northern Uganda: a needs and resource assessment

ADAKU, Alex
et al
September 2016

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Since December 2013, an armed conflict in South Sudan has resulted in the displacement of over 2.2 million people, more than 270,000 of whom were, at the time of the research, in refugee settlements located throughout Uganda. A mental health and psychosocial support (MHPSS)​MHPSS needs and resource assessment was carried out in Rhino Camp refugee settlement in northern Uganda, between June and August 2014 following World Health Organization (WHO) and United Nations High Commissioner for Refugees (UNHCR) guidelines for MHPSS needs assessments in humanitarian settings. The assessment used a range of methodologies including: 1) a desk (literature) review to understand the context for mental health service provision; 2) an analysis of data from existing health information systems (HIS); 3) an assessment of the current infrastructure for service provision using a shortened version of a Who does What Where until When (4Ws); and 4) semi-structured individual and group interviews (total n = 86) with key informants (n = 13) and general community members (individual interviews n = 28, four focus groups with n = 45).

UNCRPD: What is Article 12 and legal capacity?

MENTAL HEALTH EUROPE (MHE)
June 2016

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Article 12. of the UNCRPD wants to ensure that every person with disabilities including people with psychosocial disabilities may enjoy equal recognition before the law which requires legal capacity.

This short animated video seeks to explain what legal capacity is all about and recalls that everyone has the inherent right to make their own choices including people with psychosocial disabilities. 

Living in hell : abuses against people with psychosocial disabilities in Indonesia

HUMAN RIGHTS WATCH (HRW)
March 2016

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This article with a video is related to a report examining the abuses—including pasung—that persons with psychosocial disabilities face in the community, mental hospitals, and various other institutions in Indonesia, including stigma, arbitrary and prolonged detention, involuntary treatment, and physical and sexual violence. It also examines the government’s shortcomings in addressing these problems.

Based on research across the Indonesian islands of Java and Sumatra, Human Rights Watch documented 175 cases of persons with psychosocial disabilities in pasung or who were recently rescued from pasung. 

 

The economic impact of inclusion in the open labour market for persons with disabilities

BEYER, Stephen
BEYER, Annie
2016

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"This study looks into the inclusion of persons with disabilities and its impact on the economy. Persons with disabilities have been included in mainstream, specialist and active labour market programmes over the years in the EU. During the first decade of 2000s, many countries have used the "Work First Approaches", which led people to work before any training. The work first approaches have during the previous times provided good employment without people having the skills. In recent times, an activation approach has been developed in order to ensure that people with more complex disabilities are included in the labour market. This created inclusion programmes that assist people in the job search process, like individual counselling, vocational rehabilitation etc". The report provides an extensive overview of studies and research on the economic impact inclusion in the open labour market for persons with disabilities can have for governments and public authorities and a more general overview assessing impact on businesses and individuals. This study provides a review of the relevant literature. Using standard methods, relevant articles in the English language (or with English language abstracts) were identified, published between 1980 and 2016. 
 

Abuse and denial of sexual and reproductive rights of women with psychosocial disabilities in Mexico

RODRIGUEZ, Priscila
et al
February 2015

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This report presents the situation faced by women with psycho-social conditions in Mexico based on the results of a year-long study. This research included the application of a questionnaire to fifty-one women with psychosocial disabilities who were either members of the Colectivo Chuhcan or received outpatient services at four different health clinics and psychiatric institutions in Mexico City. The main finding of this report is that the Mexican government has failed to implement policies that ensure that women with psychosocial disabilities have safe access to sexual and reproductive health services, on an equal basis with others. It is recommended this research be extended to the rest of the country to gain a clearer picture on the situation of the sexual and reproductive rights of women with disabilities at a national level

Andrew Mohanraj : mental well-being, disability and disaster risk reduction

MOHANRAJ, Andrew
January 2015

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This video is an interview of Andrew Mohanraj, Regional Mental Health Development Advisor from the Christian Blind Mission (CBM) International. He explains why mental well-being and disability are important issues to consider in disaster preparedness and recovery, how efforts to reduce disaster risks can better address the needs of persons with mental and physical disabilities, and lessons learned from his own experience

Expert group meeting on mental well-being, disability and disaster risk reduction

ITO, Akiko
December 2014

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This Expert Group Meeting was organised by United Nations University International Institute of Global Health (UNU-IIGH) and Institute for the Advanced Study of Sustainability, and the United Nations Department of Economic and Social Affairs, in close collaboration with the World Bank Tokyo Development Center (TDLC) and the National Institute of Mental Health, Japan.  This video provides an overview of issues, trends and international norms and standards, as well as good practices and lessons learned from different countries related to mental well-being, disability and disaster risk reduction that were discussed

Expert Group Meeting on Mental Well-being, Disability and Disaster Reduction

Tokyo, Japan

November 2014

Assistance to victims of landmines and explosive remnants of war : guidance on child-focused victim assistance

KASACK, Sebastien
November 2014

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This resource presents guidance on child-focused victim assistance. The first section contains the acknowledgements, foreword, acronyms and chapters one through four outlining victim assistance introductory information, stakeholders, international standards, principles, coordination and cross-cutting issues.  Another six stand-alone documents are available for the six technical components comprise data collection and analysis, emergency and continuing medical care, rehabilitation, psychological and psychosocial support, social and economic inclusion, and laws and policies. The final chapter contains resources and references that users may find helpful

Torture in healthcare settings : reflections on the Special Rapporteur on torture's 2013 thematic report

ANTI-TORTURE INITIAITIVE
February 2014

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This resource is a collection of articles focused upon the treatment of people with psycho-social disabilities in health-care settings, particularly with regard to torture, abuse and ill-treatment, and reflecting on the Special Rapporteur on Torture’s 2013 thematic report.

It brings together contributions by more than thirty international experts in response to the United Nations Special Rapporteur on Torture Juan E. Méndez’s thematic report, providing insights into essential topics and highlighting issues at the forefront of the intersecting medical, legal, and policy fields. It supports a commitment to tackling the challenges that continue to arise in promoting and protecting the human rights of persons in diverse healthcare settings globally

Victim assistance factsheets

HANDICAP INTERNATIONAL
2014

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The factsheets were developed by Handicap International (HI) as a tool to provide concise information on what victim assistance (VA) is and on how to translate it into concrete actions that have the potential to improve the quality of life of mine/ERW victims and persons with disabilities. The factsheets target States Parties affected by mine/ERW, States Parties in a position to provide assistance, as well as organizations of survivors and other PwD, and other civil society - and international organizations.

 

This package consists of 12 factsheets. Six focus on a specific sector or public policy area that VA is an integral part of and the remaining six are dedicated to cross-cutting issues. With a view to promote synergies between different frameworks, each factsheet makes clear links with development sectors and issues.

 

The 12 topics include: Medical care, Rehabilitation, Psychological & psycho-social support, Education, Social inclusion, Economic inclusion, Gender, Empowerment, Accessibility & Access to services, Data collection, National Action Plans, Coordination, and International Cooperation and assistance

United Nations expert group meeting on mental well-being, disability and disaster risk reduction

UNITED NATIONS UNIVERSITY
et al
2014

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This report presents information from the Expert Group Meeting on Mental Well-being, Disability and Disaster Risk Reduction and highlights "to achieve sustainable human development that leaves no one behind, it is necessary to prioritise the mental health and psychosocial well-being of all people, including persons with physical, mental, intellectual or sensory impairments. It is also imperative to make DRR measures that are inclusive of disability and do not neglect persons with mental or intellectual disabilities. In this regard, the expert group adopted the recommendations indicated below for outcomes and follow-up with respect to (1) the Post-2015 Framework for Disaster Risk Reduction at the World Conference on Disaster Risk Reduction in 2015, (2) follow-up of the Third High-level Meeting on Disability and Development, (3) the Post-2015 Development Agenda/Sustainable Development Goals, which will be adopted in 2015, and other relevant international and national frameworks"

Expert Group Meeting on Mental Well-being, Disability and Disaster Reduction

Tokyo, Japan

November 2014

Globalising mental health or pathologising the global south? : mapping the ethics, theory and practice of global mental health

MILLS, China
FERNANDO, Suman
Eds
2014

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In response to moves from the World Health Organisation (WHO) and the Movement for Global Mental Health (MGMH) to redress the unequal access to mental health care in low and middle-income countries (LMIC) compared to high-income countries (HICs), the papers in this special issue of Disability and the Global South seek to highlight the issues of simply exporting a system developed in the global North irrespective of social and cultural context and lay the ground for (re)imagining and practising healing and support differently in LMICs and in HICs. The issue is a collection of 14 articles, including voices from the field

Disability and the Global South, Vol. 1, No.2

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